Tuesday, September 30, 2008

catching up, part 1

10/16/08 How could it be that 2 weeks have already passed? I guess it's a sign of the times, and a sign of things to come, that I haven't had time to email or post anything here for so long. I've had such poignant thoughts in my head for marking the milestones that came upon us like rain these past 14 days, but attending to the boys, and once in a while myself, made taking such time impossible.... I'm going to try to post about these significant dates in the days to come. Here's the first:

Milestone - 40 weeks - October 2, 2008

Release the Stars

Today marks 40 weeks gestational age for Shoghi and Maxwell - their official estimated due date. We have been together since January 10, 2008, and we've been getting to know each other since.

first ultrasound showing twins.

Way back when I was only a few weeks pregnant, a small group of us tied red strings around our wrists as a symbol of protection for the pregnancy. At the time, the doctors were wondering if the pregnancy would be viable, and it seemed like a gesture to the universe that I intended to carry these babies all the way.

here i am at 31 weeks - a week before they were born...
was i ever this pregnant?

korin, ruby and i on a rare outing on hospital grounds during my time on bedrest

A few days before giving birth to the boys, Korin hosted an intimate birth blessing right in my hospital room. My mother was there, as well as my sister, Korin, and a second friend, Atika. We read all of the blessings from the beads exchanged from my due date group on Mothering, we said prayers and shared wishes and fears. We all tied another red string for a safe birth. (I'll add photos here when I get them from those who attended the blessing)

Well, all these wishes for protection have come to pass - a safe gestation and birth were had, and then a healthy stay in the nicu...

Auntie Laurie & her collection of arm bands

my mom, aka "memere" in the nicu with shoghi

could Max have ever been so small?

...and now that they've been home and reached their full gestational ages, it's time to cut the cord, so to speak.

shoghi and max, first week at home
maxwell & shoghi, 3 days before due date

Tonight, Laurie, Korin and I cut off our bracelets. Mom had cut hers off when the boys came home from the hospital... it feels like these graduated stages of bringing the boys into the world. It was a tearful moment - taking that symbolic step of allowing one stage of protectiveness come to an end. Seeing my two miraculous sons living healthfully in this world of being takes my breath away - I know that as the years go by, layer by layer, I will indeed be releasing them to the influences, the challenges, the triumphs and tests that this life brings. So I make the wish that most parents must make (would that I could say "all parents") -

that my boys find this world to be a kind place,
that they be protected by forces greater than me, that they find joy and friends,
and that they know forever and always how very much they were wanted,
waited for, and cherished, breath by breath, day by day.

May this world receive my children with as much love as went into their creation.

Monday, September 29, 2008

coping and twin access

Deeeeeeep breath. We're on day 3 of our first colds. It's a minor one, but as with everything with twins, it's proving to be more work, more intense, than I could have imagined. The boys are upset by their inability to breathe (who wouldn't be?), and need to be held and snuggled... which isn't easy for one person to do, particularly when that one person also feels like crap. Fortunately, Laurie's here today, so she's cuddling Max now as I nurse Shoghi.

When I'm alone, there are times I just need to stand back and take a deep breath, especially when they are both screaming at the same time. It's just not safe to pick them both up, and how do I choose one over the other? I just lean in really close and talk to them until I've got my wits about me and can figure out how to help them. Here's a video of both boys crying - I know it might seem cruel to capture this, but hey, it's a big part of parenting babies, and even more so, parenting twins. You've got to have a strong stomach for tears, I tell you. I'm wide open for suggestions & tips, so feel free to leave some in the comments!!

Here are some of the things that are becoming my top coping mechanisms:
  1. tandem nursing. i've done it 3 times now by myself... hopefully this will become the standard for feedings, but that's a ways off still.
  2. hulu.com. perfect for night time feedings, when i need something to keep me awake and i'm between netflicks disks. i've been watching bones. thanks to ben for the recommendation!
  3. pandora.com. the boys love music, and this cool site hits the spot for them and me. Laurie swears that Max is a sucker for a little James Taylor. iTunes' new genius feature works similarly and is brilliant.
  4. brownie and a glass of milk. need i say more? sometimes comfort food is the only remedy
Admittedly, "coping" implies hard times... and yes, caring for these boys is hard - harder than I imagined, and I have years and years of childcare experience. Having cared for only Max while Shoghi was in the hospital, I can say definitively that taking care of one baby is many times easier than caring for two. At the same time, though, I have to remind myself that I am living my dream right now - in many ways it's better than I ever imagined.

We all marvel over just how different the boys are, and how much fun it is to be able to discover each of them. I am so enjoying this fleeting time when they are still so tiny - even though Max is over 8 pounds now, he and Shoghi are still just wee little peanuts, so fragile, so physically moldable... they just melt their little bodies into balls of baby and it's pure delight. I have to remind myself that just a few weeks ago, when Max was hitting 6 pounds like Shoghi is now, we all thought he was so big... when in fact, he was (and is) still so tiny. I want to be really present to both of them, because even for their obvious differences, they are still absolutely tiny, perfect babies... and changing before my very eyes.

They're starting to really respond to me, which is so special. They seek me out with their eyes when they hear my voice; they seem to hold me, somehow, when I pick them up. They curl into my arms when we nap together, and calm down when I try to talk them down from their sometimes desperate crying... even if it's only temporary, it makes me feel like they really do know I'm here for them, striving with everything I have to make their experience of this physical life easier in any way I can. They obviously love nursing. It's an organic experience of love and dependency like I've never had before, and it's so much more than I could have imagined.

So, even while the hardship of this time is prominent and probably comes out more in my recording of this experience, the foundation for it all is blissful and wonderous.


A little shout out to my uncles - Hi Donald & Paul!! There are new pictures in my photostream on flickr - I often upload new ones without blogging them, so you can check there if you're looking for your twin fix! there's a link to flickr on the right sidebar in this blog, or you can bookmark it here. I do post family/friends only pics too, so you'll need to create an account and add me as a contact if you want to see those. I also upload some videos to youtube that I don't blog, like the next one of Max, yawning in the sun. You can find my videos here. :o)

Wednesday, September 24, 2008


(taken in part from a recent email)

Shoghi has hit the 6 pound mark, and Maxwell should be reaching EIGHT pounds today or tomorrow! Both are maintaining their individual growth curves, so the weight difference is only reflective of their unique physiologies.

Shoghi is doing better. The apnea monitor, which I only use at night, has gone off twice for low heart rate, but I was actually already helping him through a choke at the time. It really does help me sleep, knowing that if anything happens, it will wake me. His reflux seems a bit better now that he's on the zantac - he's not making that sour "mister yuck" face anymore, and maybe it's his bigger size that is helping him handle incidents of spitting up better. Even though I have to help him sometimes by clearing his nose and mouth, he also resolves more on his own.

Max is leading the way in longer sleep stretches - he is sometimes extending the time between feedings to 4 hours at night. It's a miraculous thing. He's so chatty - making noises all the time, especially in his sleep! He spent a night with Auntie Korin and then 2 nights with Auntie Laurie, and both of them commented (lamented) on his vociferous ways. He's also starting to coo, which is super cute.

Nursing is coming along! Shoghi is nursing at least 20 minutes for each "meal" and supplementing with bottle for the rest, and Max isn't far behind. I'm still waiting for my supply to keep up with their needs, but I've had to drop a lot of the pumping, for the sake of my sanity and so that I could actually meet the boys' other needs. Both of them seem to have a tongue tie, so I will have them checked by and ENT doc soon. That apparently has a big impact on nursing. We abandoned using the nipple shield several days ago and never looked back. Now I'm experimenting with using a lact-aid, which involves using a small tube to allow the baby to take in formula while nursing at the breast. This transition to breast can be a long one, but our dramatic progress over the past week is really encouraging. I'm not going to make any decisions about long-term strategy until we've tried to increase nursing sessions and supply for at least another month.

They boys are both so beautiful, it just melts me. After all the years of longing, loss, and pushing through, I'm astonished to find myself the mother of these two perfect babies.

Thursday, September 18, 2008

favorite things, or survival tactics

"stay awake" sung by julie andrews... i set this song on repeat, and 9 times out of 10 am rewarded with sleeping babies. it also prolongs naps, but it may wear on adult listeners! my boys really respond to music - this one song in particular.

back pillow - makes all the difference in nursing, rocking, sleeping sitting up, and giving bottles in bed. i just got one like this

baby carriers - for easy-on and off, we all love the kangaroo korner fleece pouch. for carrying two, or for a more supportive fit, we love our sleepy wrap.

snap n go stroller - i got a single and love it. easy to push with one hand, light, easy to put together. i push one babe and sling the other.

pacifiers. ugh, i never thought i'd be a binkie pusher, but also never thought i'd have twins. after a month in the nicu, they're hooked, and i have to admit, they're helping me maintain some semblance of sanity.

diapers... well, it goes without saying, right? but i have to say, pampers swaddlers win hands down over huggies, which have leaked every time i've used them. far more preferable are our cloth diapers, and my faves so far are very baby - thanks, Miriam!

people who help! ha, ha... i've never been so eager to say YES to offers for help. i've been so lucky to have an amazing core of supporters, and every day i thank my lucky stars for them and for a very generous fellow twin mama, who has been dropping off bags of wonderful food every week. there are a host of others who, between their delicious foods, visits, and baby clothes gifts, have made such a difference! from afar, emails and cards welcoming the boys and offering moral support have been so touching and wonderful.

ok, babies waking - gotta go!!

Tuesday, September 16, 2008

home again, jiggedy jig

OK, we're all home again; hooray.

Right now, with 2 sleeping babies and a ton of stuff to do, I'm employing the hands-free method of expressing breastmilk- i.e. a modified sports bra. We also call this the "fem-bot" look here, but despite much discussion/teasing, there will not be a photo of me sporting this rather hysterical but at the same time strangely demeaning look. If you're a newly pumping mama, though, definitely try this out. The method in the link above is far more complicated than what I've done, which is to just cut 2 very small holes in a tight sports bra through which to pop the horns. Seriously, after a month of holding the pumps, being able to type, soothe a baby, or write an email while pumping is a huge gift.

Anyway, I don't know where that tangent came from... I guess milk is on my mind, since now that both boys are home again my life is pretty much all about milk, whether in the form of formula, expressed breastmilk (EBM), practice nursing with the babies, changing diapers, or eating/drinking/taking herbs in order to produce more. All of a sudden, we have no discernible schedule anymore, which means I will have even less sleep than before Shoghi went back to the hospital. It's an intimidating prospect, to say the least. When I read that "surviving the first year" is the hard part of having twins, I really had no idea just how true that statement would be. and this is only week 2!

Laurie spent the night last night, taking over full care of Maxwell through the night so that I could care for Shoghi. He came home yesterday with a script for xan.tac and an apnea monitor. I'll be using the monitor only for nights, so I can get some sleep without constantly worrying that he will choke without my knowledge, so for the first night, I wanted to see how it would go. The docs had told me that the monitor falsely alarms quite a bit, but I'm happy to say it didn't sound once all night. I'll try to take some pics so you can see how it works. Shoghi also had his first chiropractic adjustment last night - hopefully this will eventually help him with the reflux.

Tonight, care of both babies will return to their mama, so I'm going to try to rest up this afternoon in anticipation of a long night. We go back to follow up with the pediatrician on Monday.

Sunday, September 14, 2008

while we wait

Shoghi should be coming home tomorrow - it seems that he does have reflux. I'll provide more details after my visit today. In the meanwhile, here are some photos from the first week home... more are on the flickr page.

Saturday, September 13, 2008

back to the hospital

A very brief post today - I'm sorry I haven't been able to post in the past week - I simply haven't been able to sit and type. I wish I had, since this time passes so quickly. It's amazing to have the boys at home... in the whole range of amazement. One of the NICU nurses told me that twins does not equal twice the work, but instead an exponentially greater amount of work, and wow, he was right.

Sadly, I only know this because this morning finds me sitting at my computer with only one baby at home. Yesterday, I had to take Shoghi back tot he NICU for observation. During the week he was home, he developed reflux that presented itself as some very serious choking incidents where I had to revive him - three times in 5 days. I really cannot describe how horrific it is to watch a tiny, 5-pound baby lose his life energy before your trembling hands and heart. Armed with only intense love and a bulb syringe, there was more than one moment this week when I wondered if I was going to be able to save him. :shuddering sigh:

Since there are some other mamas expecting little babies soon who are reading, I will recommend the following:

1) have a bulb syringe in every sleeping area, including carseat and bouncy seat. You might never use it, but when you need it, you need it IMMEDIATELY. You might also ask one of your care providers to help you get comfortable with when and how to use it. It was a huge help that I had asked to be walked through it a few times before coming home.

2) if you've taken infant CPR, also ask your care provider to talk with you about steps BEFORE you start CPR.

i think i had more in mind, but that's all i can think of for now.

i also have to say, after a week of doing it, i cannot imagine actually CHOSING to use bottles. what a huge amount of work it is, pumping, mixing formula, fixing bottles, washing, and bearing with crying babies as you wait for the milk to slowly, slowly warm. how much easier, neater, and more satisfying nursing is. i can't wait until we can ditch the bottles.

finally, if you twin mamas can line up family/friends/professionals to take care of you when your babies arrive, do so. i am learning to not feel guilty about korin and laurie (and ryan, and ruby, and all the belpved people cooking for us) stepping in and taking care of things for me. it's also important that they be able to percieve what needs doing and just shoo you out of the way, hand you food and water and meds/herbs/etc, take a baby for burping or changing, do some laundry, etc. it is the only way to survive.

anyway, as you can see, it's been a week of learining, bonding, loving, receiving, protecting, and surviving. i'm sorry for not posting more - you've all been on my mind as the days pass, and i wish i could give you more of a window into this little life.

sending my unbounded love back to you all, and thank you for your comments, emails, messages... i have received them all with joy and gratitude,and for the record, my lack of response is only reflective of caring for twins.

hopefully more soon - if there's no news for a few days, just assume that all is progressing without danger or incident. i will let you know when little shoghurt comes home.

Saturday, September 6, 2008

homeward bound

The boys are home!!!!!!!!!!!!!!!!!!!!!!!!

oh happy day

more soon...

love & thanks,

Thursday, September 4, 2008

apnea countdown, continued

All day long, I agonized over my last post... I don't like to complain too much about my experience, and yet again, I'd like to paint a realistic picture of what this has been like for me, for us. I'd like to think that someday, I will be able to take what I've learned here and help someone else get through their own NICU circumstances. If that's a little too ambitious, then maybe more simply, I'd just like to be able to record my experience, for myself, for my boys, for my family and friends. That experience, like many others life brings, is shaped with so many facets of emotion and thought.

These days, I don't have much time to process, or to think out how to say things. I'm weary by the time I get home from the hospital at night, and if I use the computer at all, it's to quickly check email, then to edit photos, and lastly, to put up a blog post. Then of course I also have to pump for the boys, as soon as possible after I get home, then again before bed, and if I'm lucky enough to drag myself out of bed at 3 or 4 in the morning and again at 6. It's hard to get up and sit alone in a room with a breast pump in the wee hours of the morning... I'm assuring myself that while it will still be hard when the boys are home, their cries and hunger will leave me no choice, and so it will be in some way easier. At the very least, I will be interacting with my children, and not a bunch of plastic parts. You know what I mean.

As the boys have become more alert, I've been looking for some simple
black and white "toys" for them to look at. This morning, Laurie brought
over this beautiful mobile she made just for the boys.

max, enthralled.

Anyway, this leads me to my dilemma about my post from last night... and my perhaps dramatic way of requesting that people not remind me to see the silver lining. I don't necessarily have a clear thought about how I should have written it differently, but the alternative would have been for me to write nothing at all, and I'd rather be able to just put out an emotional plea that comes from a slightly irrational state.

Last night I didn't tell the whole story. The whole story would have included the part where I got to the hospital and was told that they both had had apnea spells, but there was no documentation of the spells except in the computer... and the artifacting from the heart and respiratory leads can look like a spell where none had actually occurred. In other words, the night nurse had made no notes of intervention, which is very, very unlikely in the case of an actual apnea event that would have lasted over 30 seconds. I never was able to get an answer as to what had happened or if the spells had been authentic, leading to some rather profound frustration at the idea that they might be spending extra time in the hospital when they could safely be home with me.

Today, Max & Shoghi had their carseat tolerance tests -
which sits them in their seats for 90 minutes
to see if they
have any apnea spells at this angle.

Both boys passed, but Shoghi will go home in a car bed,

since he is too small for the carseat.

Today's request, then, is rather different... it's a request to simply be with me, with us, through this next phase of the countdown, without congratulations or too much excitement. Today, the doctor told me that, barring any issues, Shoghi and Maxwell will be coming home on Saturday. Now every hour is fraught with excitement and fear, all at once. Will I be buckling seatbelts on my little guys on Saturday, or sitting at their bedside again with a heavy heart? I tried to put my faith in them having grown out of their apnea, and went tonight for a last-minute run to get supplies... baby bottles, waterproof pads, sleepers, and more diapers. Me... shopping for these things for my babies, my boys, my sons. It makes my chest tighten with emotion just to say the words "my sons."

This part of the journey is one I haven't yet shared with many outside my immediate circle... this feeling of disbelief, this sense that, without having them with me physically, they are not actually my children. It is something that I can almost not touch with words, a feeling that is vague and sad and something like instinctual, and perhaps explains some of the pain of this separation we've had for the past month. Suffice to say, I have been holding my breath for 4 weeks now, waiting for the moment when I can take my babies into a room and close the door behind us, to lie with them and really look at them, to hold them and share the knowing that we are indeed a family.

Hopefully that sacred day is less than 36 hours away. Sit with me awhile, then, if you don't mind... wait and hope with me that when I write next, it will be with my beautiful sons, home at last.

Wednesday, September 3, 2008

"apnea countdown", or, "psyche!"

When Shoghi had his feeding tube taken out last week, it never had to be replaced - since then, he's been taking all his food by mouth and meeting his intake requirements. It is because of that, then, that Shoghi and Maxwell have both been on the "apnea countdown". Both boys have prematurity apnea, so they need to go 5 days without a "spell" before they will be allowed to go home. This is all we're waiting for now. This team of doctors doesn't like to send babies home on apnea monitors because they are apparently too sensitive and alarm 20 false times for every authentic episode.

On Friday, I was told that Shoghi would be episode-free on Tuesday (yesterday) and Max on Thursday... so it was with great anticipation that Laurie and I arrived at the hospital yesterday. I assumed that we would be finalizing details of the carseats, etc., and generally spending a joyful day preparing to take the boys home. Alas, I arrived to find out that Shoghi had had a spell during the night, and Max had one that morning. Reset the countdown for 5 more days. I cried many, many bitter tears.

(I'm leaving this next paragraph intact, for now, unless it causes further misunderstanding, but I want to be clear about where I was coming from. So many of you have reminded me to be optimistic and have sent your loving support in comments and emails. I didn't mean for the following to seem like some kind of passive-aggressive attack. It was more of a reaction to the hospital staff, who keeps prodding me all day long to look on the bright side. When I was writing this late last night, after more than 10 hours in the hospital, that was all I could think of. So, please don't feel like this was aimed at you! I have so appreciated all of your love and support.)

Please, I beg of you, don't ask me to think of how healthy they are or remind me to be grateful. It goes without saying that I am profoundly happy that my two sweet sons are healthy, doesn't it? Shouldn't it be obvious that I don't want them to stop breathing at home? All of that is true, but at the same time, every fiber of my being cries out for them. I want to be with them all day and night... I want to be alone with them again, for the first time since we were all one unit. I feel torn and bruised every time I have to leave them. It just shouldn't be this way.

Anyway, without further ado or self pity, here are some photos of my beauties:

it's looking like Max might have red hair!
at the very least, it's strawberry blonde.

and here is Shoghi, with his ever-calm and
expressive hands and his lovely locks.

kangaroo care is so much fun with a good baby carrier.
here are Shoghi and me, happily shuggling with the moby wrap.
i got an awesome sleepy wrap from Rachel that's so comfy!!